I am getting bad side effects from Sinemet mono therapy. Basically, dystonia. Has anyone replaced Sinemet with MP and gotten better results? What brand do you buy and from where?
Also, I see that MP comes in different forms. There are organic, raw powders, concentrated extract powders with very high potency and pills. Are any of it safe from your experience?
Did you get buy-in from your movement disorders specialist? How did they react to your decision to make the replacement? Or, are you making your own substitution? I am not sure if I should approach mine with this question. After all, MP doesn't have a standardized dosage although it's potency has been established and proven.
I've been wondering the same thing. I know a lot of people use a source from Nutrivita which appears to be highly processed. Others use less processed sources. I'm wondering if the more processed product will still reduce/prevent the long term side effects people develop from standard pharmaceutical carbidopa/levodopa.
i found that my neurologist was really unfamiliar with mucuna and not willing to do any research. i found a naturalpath who works exclusively with mucuna, and he has been extremely helpful.
I saw a post that compared Mucana Puriens and Sinemet to oranges and Vitamin C pills
On surface makes sense
thoughts?
Sort of I think. MP is a natural grown shrub and Sinemet as well as the generic Carbidopa/Levodopa are synthetic formulations. Both are potent dopamine precursors and both work. In fact, MP has been used by Indian Ayurvedic medicine for 4500 years, if you believe the literature. The difference really is that Sinemet has been tested, trialed and calibrated for dosage. MP is not, although research studies have shown that it’s more potent than Sinemet. Without clinical trials and FDA approval, doctors will not prescribe. Even if they wanted to, what would they prescribe? Amazon for example has scores of formulations and manufacturers, some of which are concentrated synthetic extracts of the natural MP and therefore inherently dangerous. Once you start mucking around with the natural herb or shrub or plant, you really start treading treacherous waters.
I was hoping to find some consensus from fellow PD patients in this forum and I have not found much. I did dabble with the idea of trying one of the organic powders being sold and for now I have given up on the idea.
We are stuck between a rock and a hard place. Western medicine doesn’t have a whole lot of side effects free alternatives and if you go off the reservation by turning to MP or the much touted B1 regimen here on this forum, the danger is that your doctor might refuse to treat you.
Where do you get your dystonia as I have same problem on Sinemet only but my dystonia is in my jaw, vocal cords, throat /neck, chest, diaphragm and stomach and it causes breathing , swallowing and speach problems In fact I can't really talk at all. First thing in the morning before sinemet i have no breathing problems but have really painful facial dystonia in my mouth and eyes( I can't open them) I don't know of any one else with this type of dystonia everyone else has it in legs and arms. Someday it is so bad I think I'm going to die as breathing is so difficult . I asked to come of Sinemet but was told I'd have serious proplems but I have them already. I don't knowhow they expect us to cope . I tried macunma from several different source but only the powders worked for me not capsules but it was too much hassle if i was out and it gave me stomach problems, I'm not convinced it is any better for you than Sinemet, and it is tricky finding the right dose. In my experience neurologist are not happy for us to use it and if you go into hopital you are not allowed to take it.
I would give it ago though as some people swear by it but I would try different ones. As it's dowm to,personal choice
I should add that I’m also taking B1. The change in meds are w/o my neurologists’ knowledge over the last 3 mos. I’m in a quagmire as to how to approach her.
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